I’ve read a lot of articles, tweets and blogs in the last few months about how to manage ‘wandering’ of people with dementia. Just for a change (!!!) I’ll be very up front here, and say they are annoying me greatly.
When I go walking, even if I get lost, I am not a wanderer… I am a person who is out walking.
Sometimes people like to go for walks, even people with dementia.
Sometimes people get lost, even people without dementia.
Sometimes people walk because they are looking for something, even people with dementia.
Sometimes people go walking because they are bored, even people with dementia.
Sometimes people with dementia go walking becasue they might be trying to “escape” or “manage” the boredom of living in an aged care facility, or feeling like they are in prison, when they have done nothing wrong…
Sometimes people with and without dementia go walking due to being lonely and isolated as they live alone and are at home all day.
Sometimes people walk for exercise, even people with dementia.
People with dementia are still “real” people, living their lives just as they did before acquiring the label of dementia.
We are not wanderers, poor feeders, aggressives, or demented sufferers. We are often trying to live well, with very little support from others for our well-being or quality of life. .
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Once again Kate you’ve nailed it. I work as an ACFI co-ordinator/RN in aged care. My job is to assess residents care needs and apply to Medicare for the appropriate funding however to attract funding from Medicare for supporting people with varying levels of dementia I am expected to record the actions of each resident against the ACFI’s set parameters around “wandering behaviour”, “verbal behaviour” and “physical behaviour”. It bothers me (and a number of my colleagues) that we, the supposed advocates for people who cannot fully protect or speak for themselves are the very ones who, as part of our employment, are labelling the men and women from the moment they enter the facility. It makes it such a tough task to encourage staff to be mindful that we are simply human beings who are assisting other less able human beings.
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Thanks for your support. It will never change for us, without change at those levels, even young researchers say they won’t get published without using variuous offensive terms like wanderer! We all need to engage with these communities – governments, universities etc to start brining about change. Often, once a diagnosis of dementia has been given, the person is not really treated as a human being any more, and language and labelling simply exacerbates this.
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I sometimes just like to go out and be by myself I’m not wandering I just want to feel that freedom of independence that I made the choice to go out by myself without having to check out.
It’s a need that everyone with dementia will eventually get.
We have to ensure that a Carer does not become a Keeper
@tommytommytee18
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Very well said Tommy! and thanks for joining the conversation here, great to hear from you. xox
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…..well I’m the kind of guy who likes to roam around…….I’m never in one place, I roam from town to town…..yes I’m a wanderer, yes I’m a wanderer……I roam around and round and round and round and round…..
……….sorry about that Kate……I could’nt help myself……
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Love it Tony… gave me a giggle! My husband and I must both be wanderers too then, an extraordinary thing considering he doesn’t have dementia!! 😉
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Well, Kate, this blog has certainly attracted response. I must say that the term and label, ‘wandering,’ and, ‘wanderer,’ have given me great consternation over the years. They are part of the large collection of words that are used to label and box in people who are considered to be divergent from the norm. I like to call this, ‘the language of otherness.’ It’s an area in which the, ‘norms,’ including a large slab of people who I would expect to be better informed and more thoughtful, such as service providers, label those who are perceived to be different. This language is essentially divisive and dehumanising and not at all the direction that a growing, developing and maturing society should be taking. It is this language that makes the word, ‘them’, a four-letter-word, being part of, ‘us and them,’ — those who, ‘belong,’ and, ‘the others.’ It seems that, as a society, we continually seek to devalue that which sets our fellow humans apart, rather than embracing difference as that which makes us human. Without diversity; blandness. And so, Kate, I share your annoyance at the use of this term and how it devalues people living with dementia as those who are lesser and I applaud your succinct and meaningful piece that should get people thinking. Walk on and walk tall.
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Thank you Philip… it is great to have you join the conversation, especially with such a thoughtful (of course I’d expect nothing less!) comment. We will walk tall together my friend, as I know you will never call me a wanderer! x
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Hurrah, Hurrah, Let the bells ring out and the banners fly. People with dementia are people too. We like to go for a walk. Just imagine
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Yes, imagine that! And thanks for the hurrahs,much appreciated xox
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Sometimes people get annoyed when criticised for something that they have no contol over, even people with dementia.
Sometimes people get sad when they are mistreated, even people with dementia.
Great post Kate!
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Very well said, and a good add-on to my words! Thanks and yes, let’s all keep speaking up together. Perhaps when we go for a walk as a ‘group’ we won’t be wandering?! x
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Well put my friend…Society has a very irritating need to label everyone. I guess it was the intention of the dark to separate us any way they could. Well we are having none of that are we? As you say, we are ALL people, ALL spiritual beings, ALL energy shared by ALL. We ALL breathe in the same air someone else just breathed out…Get used to it world! Blessings…VK
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Well said my friend… love and hugs today, tomorrow and every single day! xox
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Great post, Kate! People are people and should be treated as such! Always an inspiration to pop by your blog!
There is a bit of a difference between taking a walk (whether or not the person becomes disoriented) and wandering. Wandering is a symptom of dementia, and – as you pointed out – often a response to something else they are trying to work through. Understanding and communicating emotions becomes more difficult as dementia advances, and wandering is one of the coping mechanisms that many people use to help them when they cannot find another way to communicate. A person may be expressing a need for physical activity, or boredom, or anxiety, or the need for a change of scenery. It’s important that families and caregivers recognize this as a symptom (and not always a negative thing) and try to understand what is going on behind the scenes. Wandering is not an aimless activity – it serves a purpose!
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Thanks for your comment and thoughts Carrie. I have worked in dementia care, and understand the ease one an say, but waqndering is symptom of dementia. I’d have to say now, as a person on the other side of that ‘label’, surely I’m still a person, who is walking to help me cope with issues such as anxiety or boredom?
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Hi Kate, I fully agree that it is insensitive and inappropriate to label people as “wanderers,” I was not trying to give an opinion of otherwise (sorry if I did). I was meaning to say that the need to move can be a symptom of something else and/or another form of communication, and that we could listen and look a bit closer at what the person is saying or doing.
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Thanks for the clarification Carrie… much appreciated.
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Well said Kate. I have attempted to avoid labels at all times during my many years working within aged care, with the term ‘wandering’ being a pet hate. I often wander – round the house, around my neighbourhood, on wet days within shopping centres, in the city…. we, all of us, have the right to wander. it’s just walking, with or without a purpose.
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Thanks Wendy… as you say, we all wander (walk) occasionally too.. Take care xox
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Hi Kate. As always I agree with you. I’d like to hear your thoughts on the oft’ mentioned ‘behavioural and psychological symptoms of dementia’ , or BPSD. Keep up your great work, it DOES make a difference. Denise x
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You might be sorry you asked Denise!! I would like to see that term changed, as well as the DBMAS – it is the difficulties with communication – or at least, the difficulties of those caring for people with dementia who don’t take the time to ‘understand’ what is being communicated that casues the ‘behaviours’. That word simply implies, like a child, that the person with dementia has misbehaved. The latest “Bible” for manging “Challenging Behaviours” I’d possibly throw in the bin and start again, and whilst I respect the authors, it is OBVIOUS there was little if any input by people living with dementia. A topic for a blog at some later stage Denise. X
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Professionals have to be very careful here.
A relic from the traditional German school of neurology are two particular phenomena: moria, or foolish or silly euphoria, and Witzelsücht, or a tendency to tell inappropriate joke.
http://neuro.psychiatryonline.org/article.aspx?articleid=102006
There has been a creeping tendency to pathologise behaviour.
Here in England with the ‘drive’ towards improved diagnosis rates for dementia, memory problems which can feature as part of normal ageing are at danger of being put into the dementia diagnostic category.
I like others am risk of silly euphoria, or telling inappropriate jokes.
Wandering is an area where people inadvertently impose moral judgments through language, “challenging behaviour” being another example (which tends to have as a root cause a failure in communication with somebody).
There will be examples where somebody has found himself or herself in a very dangerous environment, seemingly with no explanation. And I’ve got a whole chapter reviewing the law and ethics of smart technologies such as GPS trackers in the work I’m doing on living better with dementia.
But ‘wandering’ is an area where there are many unhelpful opinions in circulation too, and I very much share your pain, Kate.
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Thanks Shibley… for your support, and your considered response to my blog. As always, I learn something new! The trick now is to remember it… perhaps by going wandering, it will help?????
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#KoalaHugs
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Thanks #twinnie xox
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Perhaps people walk to get away from people who use such dehumanising language about them! …I find this behaviour boxing brings up a lot of anger in me… 🙂 x
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Oh Alex.. ME TOO!!!!! I’m sure our cats would agree too! xox
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Kate, I work with clients who have dementia and you are saying everything I have been trying to tell people. ….I love your posts your are an inspiration to EVERYBODY. …. Welldone
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Thanks Gidget, and it is great to have you hear joining the conversation. Keep on caring. x
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I’d like to think that there has been some improvement in attitudes, thanks to you and others bashing away – but there’s still a long way to go. Perhaps the underlying problem is that people still think along the lines of ‘how to manage people with dementia’. If you can change that mindset, you’ll change attitudes towards all of the associated ‘behaviours’. Please keep bashing away!
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Some days it feels like we are making progress… on others, it feels like it will be my next lifetime before things change! Thanks for your support.
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Well said Kate!
Ironic that so many people are buying ‘Fitbits’ and deliberately doing some ‘extra steps’ for no particular reason other than to increase health and well-being…
Lots of ‘wanderers’ taking to the streets!! xox
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Yay.. bring on the wanderers… more power to us all!!! xox
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Good on you for getting annoyed!!! I totally agree with every point you have made and this ‘Energiser Bunny’ would be seriously ‘cheesed off’ if someone labeled my daily jaunts as ‘Wandering!’ And ‘He Who Must Be Obeyed’ totally agrees with you too!
Love and Hugs xxxx
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haha.. thanks for your support Energiser Bunny…. lots of love from Action Barbie!!!! xox
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